If there’s one constant thread you hear in people’s stories of getting diagnosed with arthritis, it’s that they were diagnosed with Everything Else first. And by everything, we mean everything — from panic attacks to sports injuries to growing pains to cancer, arthritis patients have been told they have every disease under the sun. For example, at least 96 percent of people with ankylosing spondylitis or psoriatic arthritis have been misdiagnosed at least once, according to 2018 data from CreakyJoints.
Tragically, some people are even told they’re faking or exaggerating their illness for sympathy or that they’re just imagining it. (Because if you were going to imagine something you’d choose agonizing, unrelenting pain over, say, a castle made of birthday cake?)
All of this adds up to two major problem: wasted time and, more importantly, unrelenting pain symptoms. The sooner you get diagnosed, the sooner you can start treatment and the sooner and you can help stop or reduce the damage being done to your joints (and your psyche).
We talked to a dozen patients with different types of arthritis about the best thing they did to get an accurate diagnosis. Consider whether they can help you too.
Don’t Allow Your Symptoms to Be Ignored
“I wasn’t misdiagnosed so much as just ignored,” says Elizabeth P., 35, of Miami, Florida. “I’d fought chronic pain for years but doctors usually blamed it on my polycystic ovary syndrome and being overweight. This led me to avoid doctors until I literally couldn’t use my hands.”
But after years of putting up with this lack of treatment, she reached her breaking point. Elizabeth searched until she found a doctor who would really listen to her and not just tell her to go on a diet. After blood work came back positive for arthritis markers, she was referred to a rheumatologist and diagnosed with rheumatoid arthritis. “It’s so important to find someone who will listen. Don’t be afraid to be honest and speak up,” she says. “Get a second — or third — opinion if you feel like you’re being ignored.”
Ask for an MRI
As a veteran of the U.S. Army and Air Force, a trained MMA fighter, and a childhood filled with football and hockey, Tim P., 39, of Apalachicola, Florida, lived an active life. So he wasn’t too surprised when several years ago he started getting pain in several joints, his neck, and back. X-rays showed bone spurs and some old injuries but that didn’t seem to add up. He’d had those things for years without the kind of pain he was in now. So he asked for additional scans to be done. The verdict? Tricompartmental arthritis in each knee plus osteoarthritis. “I learned that X-rays don’t show everything and you really can’t tell what is going on in your joints until you get an MRI,” he says.
Do Your Homework
No one is saying you should replace your doctor’s advice with random stuff you read on the internet but when you’re having a hard time getting a diagnosis, the web can help surface possible solutions. “I’d been suffering with joint pain and other symptoms for three years but my blood tests didn’t show any inflammation markers and my doctor was out of ideas,” says Fred B., 38, of New York City.
That was when he decided to google his symptoms and look for answers on his own. “It was actually ‘Dr. Google’ that suggested psoriatic arthritis. I brought it up to my GP, who agreed and referred me to a rheumatologist, who confirmed the diagnosis.” Ironically, he says that he had had psoriasis for 28 years and had seen multiple doctors and dermatologists but not once was psoriatic arthritis mentioned. Because PsA is a lesser-known type of arthritis, he suspects many doctors may not be aware of it themselves.
Know that Blood Tests Aren’t Black and White
Between 50 and 80 percent of people with rheumatoid arthritis will be “seropositive,” which means their blood tested positive for certain markers. However, that means the rest of the people will get a negative test — called seronegative arthritis — and this can lead them and their doctors to miss the arthritis. “Be aware of your joints, ligaments, and tendons and if you have pain, insist on seeing a specialist,” says Fred.
Keep a Symptom Diary
Alannah M., 21, was finally diagnosed with inflammatory arthritis after living for two long years with what doctors kept telling her were “just growing pains.” What finally got her doctor to listen to her was when she showed them her journal where she’d tracked her pain, inflammation, and other symptoms, along with her exercise and diet. “What really helped in getting referred to a specialist was having my diary as it showed that there was a pattern,” she says. (You can use our ArthritisPower app to track your symptoms and disease activity and share your results with your doctor.)
See the Doctor When Your Symptoms Are the Worst
Ideally, your doctor would believe your reports of pain but sometimes they just need to see it for themselves, says Hanne H., 32, from Hammerfest, Norway, who struggled to get an accurate diagnosis since childhood. “One thing I learned is to make sure you see the doctor while you are actually having problems — get emergency appointments if you can,” she says. “Because tests can be inconclusive, having an ‘eye-witness account’ of your active inflammation from your doctor really helps as the swelling is visible proof of your problems.” Eventually Hanne was diagnosed with polyarthritis from unknown cause (possibly reactive) to juvenile inflammatory arthritis at age 16. As an adult she was also diagnosed with ankylosing spondylitis.
Note All Kinds of Inflammation
Arthritis is, by definition, a disease that causes inflammation in the joints. But that doesn’t mean you can’t get inflammation elsewhere too — and that’s important information your doctor needs when diagnosing you, Hanne says. “Don’t discount inflammation or pain in other parts of your body,” she says. “Inflammatory types of arthritis are systemic, so don’t just focus on your joints, make sure you tell your doctor all your symptoms as they may actually be related.” You might experience inflammation in your eyes, called uveitis, for example. Chronic inflammation can also cause fatigue.
Don’t Let Docs Write You Off Because of Your Age
Too many people hear “arthritis” and automatically think “80-year-old” — and that includes some doctors, unfortunately. “It took me 10 years because of my age and lack of inflammatory markers,” says Joy G., now 30, of Ireland. “All my joints were swelling, I couldn’t walk properly, my hips were twisted, and yet because my blood test was negative and I was so young, they kept telling me it’s couldn’t be arthritis.” When she learned that seronegative arthritis definitely does exist, she insisted on getting a referral to a rheumatologist. He diagnosed her with psoriatic arthritis on the second visit.
Don’t Stop at ‘Arthritis’
Part of getting an accurate diagnosis is making sure you’re getting a complete diagnosis, says Elena M., 24, of Melbourne, Australia. It’s not enough to know that you have arthritis but for proper treatment you need to know what type you have and if you have any other concurrent illnesses. For example, Elena was diagnosed with psoriatic arthritis and has irritable bowel syndrome and dyshidrotic eczema, which her doctor told her is linked to her arthritis. To feel better, she has to stay on top of treatment for all three conditions and make sure that one treatment doesn’t worsen another condition, as happened when her psoriatic arthritis drugs triggered her IBS. (Read more about the link between autoimmune disorders and IBS.)
Ask for Specific Tests
When Gideon M., 21, of Surrey, British Columbia, Canada, first started having hand and knee pain, his doctor wrote it off as a sports injury. Then one day he woke up and couldn’t move his hands at all and his fingers looked misshapen. “I was very adamant about making sure that I got appropriate testing done and even asked to get bloodwork and X-rays done once my fingers got crooked,” he says. The diagnosis? Osteoarthritis. And, he adds, don’t be afraid to ask for additional tests if things get worse. “I got my second set of hand X-rays done because I noticed I was getting Heberden’s nodes,” he explains.
Call and Make the Appointment Today
Waitlists for specialty doctors vary depending on where you live and your insurance. But rheumatologists are in high demand everywhere so expect to have significant wait times — the average in the U.S. is 44 days from referral to first appointment, according to one survey. Gideon says he’s been waiting over seven months for his appointment. While you can’t jump the line, you can help by not procrastinating to start the process. Call immediately to set up the appointment and get your paperwork and referrals completed. You can also ask to be put on the cancellation list in case another patient cancels at the last minute and you can jump into their appointment slot.
Trust Your Instincts
“I was ‘lucky’ — my rheumatoid arthritis went from 0 to 60 in a matter of months so it was pretty apparent what I had,” says Sarah P., 35, of Rochester, New York. That doesn’t mean it was an easy process though. “Previous doctors told me I wasn’t working hard enough on my fitness, which is crazy because I was going to the gym four to five days a week, even though I couldn’t walk normally or go up the stairs,” she explains. “I was nervous to stick up for myself to their faces, but my mother had an atypical form of lung cancer that went undiagnosed for awhile, and she kept having to seek more opinions. I knew to trust if I felt something was wrong with my body.” After five months, she got a referral to a rheumatologist who confirmed her diagnosis.
Pay Attention to ‘Weird’ Symptoms
Extreme nausea and frequent vomiting have been a part of her life as long as she can remember, say Patty, 54, of Pendleton, Oregon. But when her knee started swelling and having pain she didn’t connect it with her stomach issues — and why would she? Fortunately, the physical therapist she was working with for her knee noticed and told her to go to a doctor. Her doctor then referred her to a rheumatologist who diagnosed her with ankylosing spondylitis and psoriatic arthritis. It turns out that she had psoriasis in her mouth and throat — and her “weak stomach” was actually related to her arthritis. “I’ve learned arthritis is an autoimmune disorder and your body attacks itself because something is wrong and that can take so many different forms,” she says.
Learn Your Family History
Sure you know to ask about your family history of cancer and heart disease, but did you know you should also be asking about arthritis? Many types of inflammatory arthritis have a genetic component — something Chris, 19, of Cardiff, Wales, found out the hard way. She was 10 years old when she first started having joint pain symptoms but her doctors didn’t take her seriously. It was nine years before they finally ordered blood tests for arthritis and referred her to a rheumatologist. “My uncle, grandmother, brother, and dad are all currently diagnosed with rheumatoid arthritis and seeing their experiences helped me recognize the symptoms in myself,” she says. This knowledge was a big clue for her rheumatologist and also gave her the confidence to keep pushing for real answers even when doctors kept telling her nothing was wrong.
Prepare for the Possibility of No Good Answers
Sometimes things happen that modern medicine just can’t explain yet. As frustrating as that is, ambiguity is something that Alison M., 52, of New York, has learned to live with. “It’s been over 20 years and I am still waiting for my definitive diagnosis,” she says. She was diagnosed with “rheumatoid-like” arthritis after showing autoimmune symptoms in high school. But her disease didn’t present in the usual way and normal RA drugs didn’t help. Even though she saw many doctors and tried every arthritis medication available, she ended up with a double hip replacement at age 25. Over the next couple of decades she had more joint surgeries than she can count but still no real answers. “I have seen several rheumatologists, a joint specialist and more than five orthopedic doctors,” she says. “None of them can figure out exactly what is wrong with me or how to treat it. It is very frustrating!”